Gracie had another good day today. She was getting to much oxygen from the air she was breathing so they put her on a nose cannula to get more nitrogen. Now her oxygen levels are where they want them to be. She obviously did not love the new nose tube but is still really good and sleeps most of the day. (I forgot to get a picture of it but will get one tomorrow.)
We met and talked to Dr. Kouretas, one of the two cardiothorasic surgeons today. He told us that she was still a good candidate for surgery and wants to do it on Monday or Tuesday but probably Monday. He will let us know tomorrow.
We talked about all the risks involved with surgery and it kind of hit us again how major this really is. She will never have the left side of her heart working. They have to make the right side do the work of both sides for the rest of her life. It is something that the doctor said would last for a while but not something that would see her into old age. That was really hard for me to hear even though I knew it already. So we just don't know what she will need in 15-20 years, we just know that she will have to have something done to extend her life, if that's even possible.
We will just try to take one day at a time and not worry about the future. We appreciate again, all the love and support we have received from our family and friends. It means the world to us.
5 comments:
I am glad she is doing so good. People have said she looks like she is 2 months old. Good job making her into a chunky monkey. We will all be praying for her on surgery day.
She is such a chunk and she doesn't have that newborn look. What a cutie!
Gracie is indeed a lucky lady to have such a special family.
Glendhill Family,
I linked to your blog from another "heart" family and have been so touched by your little Gracie. Our son was born in August with Mitral & Tricuspid valve stenosis. We were not aware of his defect before he was born. Surgery was not possible for his defect and the only way to save his life was a heart transplant. He received the precious gift of a heart at 16 days old. I remember thinking the same things as you and being so frightened for what the future holds for him. I was also scared in my own abilities as a mother as to raising him (with meds and tubes and such). It has not been easy, but it has been the sweetest blessing of my whole life. He has changed our family in a way that I never thought possible. The gospel has also taken on a whole new meaning especially pertaining to the Atonement. Our little sweethearts knew that they were going to have these defects before hand and I feel so privileged to be be a heart mommy. I am sure you understand.
I am sorry to ramble on and on, but I know what you are going through and I will continually keep your family in my prayers.
-Kim Scadlock
She is so lovely! Congratulations.
Dr. Kouretas did Jacob's surgery. He is awesome.
I too worried about what our baby's quality of life would be like in 15+ years. We were reminded that medical technology will advance as these sweet heart babies get older. Hopefully the advances will help our children live long happy healthy lives.
We are praying for you and your family!
Christina Davis
Jacob's mom
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